Aa
should i or should i not
i believe i have had c for over 10 years, maybe 20 i don't know, i was dianosed in 2003 acidentally. I would like to know should i have a biopsy to see how much damage is there, or do i also need to know viral load and geno type, i do not plan to have tx, i am taking chinese herbal formula for the liver and has worked well for 2 years, but i never feel good and fatigue i have to fight every single day, i'm always looking for a punch to get me through the day but never find it. Also would like to know if the biopsy hurts? thanks very much
Best Answer
Just a note on getting a biopsy without doing treatment. There are others who do not do treatment but still get biopsies. The ones who have done treatment and it was unsuccessful and are not able to do treatment again for various reasons fall in that category also. They have no choice but to try other strategies as you are doing and they keep an eye on how their liver is doing to determine if what they're using is working sufficiently. I do know the occasional person who chooses not to treat at all and they too get a biopsy to monitor how they are doing. Those people hope to get by without ever having to do treatment and getting the occasional biopsy is how they know where they're at. I would, again, encourage you to get one so you know what your own reality is.
I forgot to mention the reason i do not have insurance, i worked for a nursing agency for the latter years of my career, they pay more money yet do not offer insurance,but like i said med care is a lot more affordable over here in thailand. I appreciate your position, i do not have any children by choice so if i hurt anyone by not having treatment it will be myself only and i'm not too worried about that. I was in the hospital for 4 days for food poisoning so severe i went into dic, now i cook my own food and am very careful what i put into my mouth , i was septic and so so sick( that was enough suffering for me.) I do not fear death at all but i do fear suffering from chemo i know what it does to your body and mind they would not give it to me anyway because i have chronic depression, apparently inherited i take 3 different kinds of antidepressants and still does not help too much. best, Tawee
I just looked at your profile. When I was your age I felt pretty good still. I didn't know I had hep c, thank goodness because at that time I was a single mom of 3, the youngest was 1 1/2, then 4 then 12. Then I decided to go to school to be a lab tech so I could get a better paying job and good insurance while working a regular job. Made it through the bookwork part, and when it was time to do the clinical part, my ex husband quit paying child support... trying to force me back. So yes, back then I had lots of energy and spunk... About 3 years ago things started changing... my daughter's main complaint about me was,"you're always tired!" It was getting to be an effort to go outside and work in my garden, which is something I always loved doing, even when I didn't feel like doing anything else. I was getting concerned about even having any energy at all when my daughter graduated from high school, because I will be 62 then. That's why I was one of the few people who was relieved to find out about the HCV. Thank God it wasn't just normal aging! Thank God there is something I can do about it! Apparently I was infected in the early 80s, so I have had this a long time and I am only stage 2 grade 2, so it does take a long time to get bad.
Oh... one other thing, I had many liver panels done over the years before my diagnosis... they all came back normal... till the last one. You can't count on them being a good indicator of damage.
Yes, the choice is yours. My point is... when life starts going downhill faster than you want it to, you may want to see if there isn't something you can do about it. There are LOTS of people on here who have done the treatment and feel better than they have in years. That's my goal anyhow.
Diane
Oh... one other thing, I had many liver panels done over the years before my diagnosis... they all came back normal... till the last one. You can't count on them being a good indicator of damage.
Yes, the choice is yours. My point is... when life starts going downhill faster than you want it to, you may want to see if there isn't something you can do about it. There are LOTS of people on here who have done the treatment and feel better than they have in years. That's my goal anyhow.
Diane
Hi Diane i just wanted to clarify something i said to you about money. Of course i have the 100,000 i just don't feel like spending it for something that is going to make me very sick and for something i have watched people suffer through for years to no avail. I will take my chances with my liver and my chinese herbs, this is what i choose to do, people do not always die from hepatitis end stage liver disease. I take very good care of myself, and i do not think about the disease too much. I will still have a biopsy though later on......
Thanks a lot for your info and your kindness and time to respond to my question, i wish you the best. tawee
Hi Trish, yes it has been a long time ago and i know you have to let all of that go. Someone ask about my liver function test i do have them every 6 mo's and has never once been abnormal, yet i do know it doesn't tell you what shape your liver is in. lol I will get really brave and go down to the hospital and get it done. Medical treatment test ect. ect. is very reasonable over here in thailand, im going to have all my teeth redone new crowns ect. Porceline and gold only cost about 3-400 usd's and as you know in the states they cost 1200. They have very good capable dr.'s here who studied in the states or europe and of course the plastic surgery here is a great price and again top notch surgeons. Hope you are doing well trish, thank you for writting keep in touch.
tawee, truth be told many of us did this to ourselves so to speak, including me. Long years ago and paying for it now. If we were then, who we are now, perhaps things would have been different but that's not how life works, is it. Not much to be done about it other than to deal with it the way we would anything else that comes along.
I'm encouraged you'll get the biopsy. Then you'll know how to best take care of yourself. I think your denial is starting to turn into acceptance. Would be interested to know how things go and please keep us posted. Good luck with this, tawee.
Trish
I'm encouraged you'll get the biopsy. Then you'll know how to best take care of yourself. I think your denial is starting to turn into acceptance. Would be interested to know how things go and please keep us posted. Good luck with this, tawee.
Trish
I got my info from "Microbiology Principles and Explorations" pages 265 - 274. This was the book we used in my Bio 225 course that I took in 2004. It is also a good explanation for why viral load fluctuates as well as liver enzymes.
Thank you Trish for all your information and ideas, i think i will get the biopsy because i am interested in the results, and genotype also. I do not touch alcohol anymore and i eat a good diet and regular exercise and i take care of 10 dogs now , I have 6 and i'm feeding a mother and 3 pups across the street. I live on the lake so they are living on the grass for now. I try to never think about my hep c as though i don't have it, i know i am in denial, it's also worse to know you did this to yourself. My chinese herbal dr. has been one for many many years lots of americans are on his formula, it does make me feel better and i also take circulation hebs from him also it gets me up and out of bed everyday. I have only been here for 2 years but when i left the states i did not get out of bed until about 2 or 3 in the afternoon, now i get up at 10 am. Will let you know about biopsy again thank you, it helps me alot talking to you guys.
" It invades a cell where it will multiply and multiply until there are so many viruses that the cell ruptures, allowing the billions of virons to now invade near by liver cells and start the process all over again."
That's colorful take on it. One that I've not heard before. Where did you read this?
That's colorful take on it. One that I've not heard before. Where did you read this?
For the very odd person, it causes some shoulder pain but not very often.
How did you kow I had the shoulder pain? It was weird how it felt like something was pulled in my shoulder, yet they didn't touch there. The nurse said it's the same as heart attack shoulder pain, but on the other side.
How did you kow I had the shoulder pain? It was weird how it felt like something was pulled in my shoulder, yet they didn't touch there. The nurse said it's the same as heart attack shoulder pain, but on the other side.
I was a dental assistant for 24 years. I was also scared to death at first. The biopsy is not that big of a deal, the geno type give the Doctors information on how long your tx. period will be. I was a geno type 1 and did 44 weeks of tx. I would do the tx. if I were you. Its an adjustment but well worth it if it keeps you alive. I have grand babies and I want to see them graduate, get married I did it for them. Think of your family. I am having side effects since I stopped but I saw my Doc today and I beat it.
the side effects will go away in about 6 months. I feel blessed.
toothfairy1215 I wish you the best
the side effects will go away in about 6 months. I feel blessed.
toothfairy1215 I wish you the best
I don't know how the program works if living out of the country, but if the money for tx is the issue perhaps you are eligible for assistance with free TX drugs. If you don't want to go through tx for other reasons it really doesn't matter.
I also don't understand why you would get a biopsy if you are not willing to treat, but I felt no pain at all from the three biopsies I had. They are quick and basically you just feel a sensation, but nothing I would call pain.
Good luck - Dave
I also don't understand why you would get a biopsy if you are not willing to treat, but I felt no pain at all from the three biopsies I had. They are quick and basically you just feel a sensation, but nothing I would call pain.
Good luck - Dave
You also asked if a biopsy hurts. It hurts very little. It's over very quick and you don't feel much at all. The worst of it is lying on your side for about four hours and then you have to watch what you lift for 48 hours so you don't agitate the area. It's quite easy for most. For the very odd person, it causes some shoulder pain but not very often. I hope that helps.
Trish
Trish
I would go ahead and get a biopsy, tawee. Then you know exactly what your situation is. You suggested you might do treatment if you knew your condition required it and I think it would be good for you to know exactly where you're at. It would also help to know your genotype since then you'd know how long treatment would be if you decided it was something you needed to do after all. If you find out your liver damage is not that far along, then you can be looking towards the new PI drugs that are expected within a couple of years. As for cost of drugs, the drug companies do have some assistance programs that might cover much of the cost for you and there are also clinical drug trials to be considered where the cost of the drugs and most of the care is covered as well. There are potential options for you.
Trish
Trish
Tawee,
Without knowing too much about your situation, I would get a liver biopsy and find out your genotype. (If you've been in Thailand for decades, chances are you're a genotype three, which has higher odds of success with the current standard of care. It also requires only half the treatment time as Genotype ones, the most common one in North America.)
I think it's better to know your profile instead of making decisions in the dark. Your decision doesn't have to be set in stone one way or the other but knowing the bottom line is good self-care.
Liver biopsies are very valuable for people who lean toward postponing treatment. My biopsy showed little damage when the outcomes with the then treatment were dismal (interferon only). So I waited for almost fifteen years to treat.
Had I known how close we may be to even better and shorter treatments, I would have waited some more to see if the new stuff emerges as quickly as we're hoping.
The one thing about your herbs is to make sure (how, I don't know) that they're from safe sources. The problem with vitamins and herbs, whether here or there, is they're not regulated as to purity. A 'good' herb could be contaminatred with toxins and you'd never know by looking at them.
My own biopsy didn't hurt but I had a very experienced doc do it and, just as important, interpret the results. That's key to a successful biopsy. A small percentage of people do have pain. It's a day procedure and the worst thing about it for me was how boring it was to have to stay for routine observation for a few hours after the procedure - a little like flu shots - hang around to ensure no complications. I should have brought a book.
Keep asking questions. You'd be surprised how beatable this virus is and personally, I feel better after beating my own HCV than before, although I felt fine enough before.
I hope you feel better and please ensure you have both your Hepatitis A and Hepatitis B vaccines - very, very important for those with Hepatitis C.
Susan
Without knowing too much about your situation, I would get a liver biopsy and find out your genotype. (If you've been in Thailand for decades, chances are you're a genotype three, which has higher odds of success with the current standard of care. It also requires only half the treatment time as Genotype ones, the most common one in North America.)
I think it's better to know your profile instead of making decisions in the dark. Your decision doesn't have to be set in stone one way or the other but knowing the bottom line is good self-care.
Liver biopsies are very valuable for people who lean toward postponing treatment. My biopsy showed little damage when the outcomes with the then treatment were dismal (interferon only). So I waited for almost fifteen years to treat.
Had I known how close we may be to even better and shorter treatments, I would have waited some more to see if the new stuff emerges as quickly as we're hoping.
The one thing about your herbs is to make sure (how, I don't know) that they're from safe sources. The problem with vitamins and herbs, whether here or there, is they're not regulated as to purity. A 'good' herb could be contaminatred with toxins and you'd never know by looking at them.
My own biopsy didn't hurt but I had a very experienced doc do it and, just as important, interpret the results. That's key to a successful biopsy. A small percentage of people do have pain. It's a day procedure and the worst thing about it for me was how boring it was to have to stay for routine observation for a few hours after the procedure - a little like flu shots - hang around to ensure no complications. I should have brought a book.
Keep asking questions. You'd be surprised how beatable this virus is and personally, I feel better after beating my own HCV than before, although I felt fine enough before.
I hope you feel better and please ensure you have both your Hepatitis A and Hepatitis B vaccines - very, very important for those with Hepatitis C.
Susan
If you aren't going to do treatment no matter what then there is no reason to do a biopsy.
Some of us can let you know though that Chinese herbs can do more damage sometimes than good. We had one woman in here who insisted they would take care of her yet they TRIPLED her liver enzymes. You should at least consider watching your liver function tests to see if they are acting negatively to you or not. But if you aren't going to worry about going in to end stage liver disease and all that comes with it then......there is no need to biopsy. That is for folks who want to make sure that they don't - and who will do treatment if and when it becomes necessary.
Some of us can let you know though that Chinese herbs can do more damage sometimes than good. We had one woman in here who insisted they would take care of her yet they TRIPLED her liver enzymes. You should at least consider watching your liver function tests to see if they are acting negatively to you or not. But if you aren't going to worry about going in to end stage liver disease and all that comes with it then......there is no need to biopsy. That is for folks who want to make sure that they don't - and who will do treatment if and when it becomes necessary.
Diane, Tawee mentioned previously she was a U.S. citizen that is now living in Thailand. Her profile supports that too.
Bill
Bill
I forgot... the genotype will tell you how long you would need to do tx. I'm 1a... we go for 48 weeks. 2s go for 24 weeks.... big difference, so that would be something you would want to know for sure.
Diane
Diane
I know I read the name of the country you live in somewhere, but it isn't on this post, so refresh my memory please...........
Did you know that if you get into a trial, the meds don't cost anything? Also the companies that make the meds have assistance programs for the people that can't afford to pay, or don't have insurance. You say you are a retired RN... don't you have any insurance? My insurance company actually encouraged me to do tx when they found out I had HCV. I guess it was because they knew they'd save money in the long run.
The biopsy will give you the info about the condition of your liver that you want to know. Most people on here say it didn't hurt them. Mine hurt because I have a tumor where they normally go in, so they had to use a different place and go through abdominal muscles... felt like I was punched in the stomach for a couple days.
Viral loads don't give you info about the condition of the liver... those are most important while doing tx to see if the drugs are working. I'm getting ready to do the all important 12 week viral load which will tell me if I can stop at 48 weeks or will have to go on to 72 weeks.
Hope this helps with your questions... sorry if I sounded harsh the other day. The shot makes me kind of impatient.
Diane
Did you know that if you get into a trial, the meds don't cost anything? Also the companies that make the meds have assistance programs for the people that can't afford to pay, or don't have insurance. You say you are a retired RN... don't you have any insurance? My insurance company actually encouraged me to do tx when they found out I had HCV. I guess it was because they knew they'd save money in the long run.
The biopsy will give you the info about the condition of your liver that you want to know. Most people on here say it didn't hurt them. Mine hurt because I have a tumor where they normally go in, so they had to use a different place and go through abdominal muscles... felt like I was punched in the stomach for a couple days.
Viral loads don't give you info about the condition of the liver... those are most important while doing tx to see if the drugs are working. I'm getting ready to do the all important 12 week viral load which will tell me if I can stop at 48 weeks or will have to go on to 72 weeks.
Hope this helps with your questions... sorry if I sounded harsh the other day. The shot makes me kind of impatient.
Diane
Hi Tawee,
A liver biopsy is considered the gold standard for determining the amount of fibrosis one has developed over the course of their disease; and can provide information that might drive treatment decisions.
However, if you’re adamant about not undergoing therapy (“…I have not had treatment nor would i take it if offered…”), I can’t see any value in the procedure. It’s an invasive process, and while the risk of complications is low, it’s not generally performed to satisfy personal curiosity.
For instance, if the pathology suggested you had stage 3-4 fibrosis, what would the outcome be; would you still refuse to undergo therapy? I don’t see any advantage to biopsy for someone in your position.
There are non-invasive surrogate tests available that attempt to approximate fibrosis via biochemical markers such as Fibrosure and Fibrospect; but the same principal applies; why expend resources to no apparent end?
It's nice to know you manage to get out and exercise; that probably feels good, eh?
Good luck; I hope things work out for you—
Bill
A liver biopsy is considered the gold standard for determining the amount of fibrosis one has developed over the course of their disease; and can provide information that might drive treatment decisions.
However, if you’re adamant about not undergoing therapy (“…I have not had treatment nor would i take it if offered…”), I can’t see any value in the procedure. It’s an invasive process, and while the risk of complications is low, it’s not generally performed to satisfy personal curiosity.
For instance, if the pathology suggested you had stage 3-4 fibrosis, what would the outcome be; would you still refuse to undergo therapy? I don’t see any advantage to biopsy for someone in your position.
There are non-invasive surrogate tests available that attempt to approximate fibrosis via biochemical markers such as Fibrosure and Fibrospect; but the same principal applies; why expend resources to no apparent end?
It's nice to know you manage to get out and exercise; that probably feels good, eh?
Good luck; I hope things work out for you—
Bill
yes i am aware of all the things the liver does i am an RN retired early so i don't think i have 100,000 usd to have the tx plus i have seen so many patients go through chemo and i just don't think it's for me. What i meant by the chinese herbs is that i feel a lot better than i did before taking anything at all. Of course they have no western medicine for hepatitis c unless it's the interferon, believe me it isn't cheap and if it did not make me feel better i certainly would not buy it. The reason i said i wonder if i should have the biopsy is maybe if it shows much damage it will hit me in the right place and make me more prone to seek the tx. I would like to thank you for getting back to me, i welcome all of your advice and i think i just want to know really how long have i got because if it is determined not too long without tx, i would move back to the states my home. thanks tawee please write again i am lonesome for americans, not that many women here.
I don't understand why you say that the Chinese formula has worked well if you never feel good. It doesn't sound like it is working very well to me.
Let me explain viral replication to you. A virus can't multiply until it is inside of one of our cells. Each virus has its favorite host cell, and hepatitis likes the liver cells. It invades a cell where it will multiply and multiply until there are so many viruses that the cell ruptures, allowing the billions of virons to now invade near by liver cells and start the process all over again. One by one the liver cells are destroyed. Yes, the liver is able to regenerate itself to a certain extent, which is why most of us choose to do the treatment, because once the virus is killed, there is a chance of getting better. Since you say you don't plan on doing tx, that possibility isn't there for you. Your liver will just get worse and worse over time. Are you aware of all the things the liver does for your body? Are you aware that you can't live without it?
My biopsy did hurt somewhat... lots of people say it doesn't hurt them, but I couldn't have mine in my side because of a tumor there. The biopsy tells you how much damage has occurred, but why would you want to know if you aren't planning on doing anything about it? The viral load and genotype won't matter either.
Seriously, if you are determined that you won't do tx no matter what you discover, just resign yourself to the fact that you will never feel better than you do now, and you will go downhill from here as the years go by. Personally... I'm only 55 and I DON'T WANT TO FEEL LIKE THIS FOR ANOTHER 10 YEARS. I want to feel good again and enjoy life, which is why I am doing tx, even though I have a little less than a 50% chance of SVR. If I do nothing, I can expect nothing, if I do the best I can, I at least have a CHANCE of health and happiness again.
Just my thoughts... 2 days after my shot, so sorry if I came across as heartless.
Diane
Let me explain viral replication to you. A virus can't multiply until it is inside of one of our cells. Each virus has its favorite host cell, and hepatitis likes the liver cells. It invades a cell where it will multiply and multiply until there are so many viruses that the cell ruptures, allowing the billions of virons to now invade near by liver cells and start the process all over again. One by one the liver cells are destroyed. Yes, the liver is able to regenerate itself to a certain extent, which is why most of us choose to do the treatment, because once the virus is killed, there is a chance of getting better. Since you say you don't plan on doing tx, that possibility isn't there for you. Your liver will just get worse and worse over time. Are you aware of all the things the liver does for your body? Are you aware that you can't live without it?
My biopsy did hurt somewhat... lots of people say it doesn't hurt them, but I couldn't have mine in my side because of a tumor there. The biopsy tells you how much damage has occurred, but why would you want to know if you aren't planning on doing anything about it? The viral load and genotype won't matter either.
Seriously, if you are determined that you won't do tx no matter what you discover, just resign yourself to the fact that you will never feel better than you do now, and you will go downhill from here as the years go by. Personally... I'm only 55 and I DON'T WANT TO FEEL LIKE THIS FOR ANOTHER 10 YEARS. I want to feel good again and enjoy life, which is why I am doing tx, even though I have a little less than a 50% chance of SVR. If I do nothing, I can expect nothing, if I do the best I can, I at least have a CHANCE of health and happiness again.
Just my thoughts... 2 days after my shot, so sorry if I came across as heartless.
Diane
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